Endo-ERN is deeply saddened to share the news of the passing of Jette Kristensen, a founding ePAG of Endo-ERN and long-standing board member and former chair of the Danish patient organisation Addison Foreningen Danmark.
Jette was a central figure in establishing patient representation within Endo-ERN. She helped ensure that the patient voice was embedded in the network from its very beginning and remained at the heart of collaboration, care, and decision-making in rare endocrine diseases.
Alongside her European work, Jette devoted nearly two decades to leadership within Addison Foreningen Danmark, serving with exceptional commitment. Through her [...]
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As the year draws to a close, it is a great moment to look back on a set of clinical recommendations and best-practice guidelines, published earlier this year, that provide an important update on the diagnosis, management, and long-term care of Multiple Endocrine Neoplasia type 1 (MEN1). These guidelines bring together the latest evidence and expert consensus to support more consistent, high-quality care across centres.
The document emphasises that MEN1 is a complex, multi-tumour condition, and although genomic sequencing has improved the detection of MEN1 pathogenic variants, early clinical recognition remains [...]
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The European Commission has published the first-ever Continuous Monitoring Report for the European Reference Networks (ERNs), covering the 2023–2024 reporting period. This milestone report compiles data from more than 1,600 clinical units across 375 hospitals in 27 EU Member States and Norway, offering the most comprehensive overview yet of ERN activity and impact since their launch in 2017.
The report presents detailed indicators across the ERN system’s seven core areas — clinical activity, cross-border collaboration (CPMS), registries, training, guidelines, dissemination and coordination — providing a clear picture of how ERNs support patients with rare diseases across Europe. It highlights a [...]
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REGISTER NOW for the upcoming 2026 I-DSD Symposium scheduled 1-3 July, Lübeck, Germany.
Endo-ERN is pleased to endorse the 2026 I-DSD Symposium, bringing together global experts, clinicians, and patient representatives to advance care and research in DSD.
The three-day programme covers biological sex development, fertility preservation, quality of care benchmarking, hormones and athletic performance, innovations in hormone therapies, and surgical outcomes.
A half-day I-DSD Training Workshop on 1 July offers practical sessions on diagnostics, communication, hormone replacement, registries, and sex therapy.
Full agenda and [...]
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Register now for the next Endo-ERN webinar An update on genetics and clinical management of tall stature planned for Tuesday, 17 February from 17:00-18:00 CET.
During this webinar you will find out more about the diagnosis and treatment of tall stature a condition where children born with normal range for weight and length exhibit accelerated growth during childhood. Familial tall stature is the most common cause, followed by constitutional tall stature but tall stature is also seen in many uncommon conditions.
Speaker: Lars Sävendahl, Professor and Chief of Pediatric Endocrinology at Karolinska Institutet and Scientific Director of [...]
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The 13th European Conference on Rare Diseases & Orphan Products (ECRD 2026) will take place 3–4 June 2026, in person in Prague and online. Organised by EURORDIS-Rare Diseases Europe, co-organised by Orphanet, and supported by AFM-Téléthon, ECRD is Europe’s largest, patient-led, policy-shaping event for the rare disease community. The 2026 edition, titled Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases, will mark the launch of a multi-stakeholder process to develop a European Action Plan for Rare Diseases.
Poster abstract submissions for [...]
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The European Rare Disease Research Alliance (ERDERA) has pre-announced its upcoming 2026 Joint Transnational Call (JTC):
Launching on 10 December 2025, this initiative will fund multinational research collaborations aimed at improving diagnostic clarity for patients whose rare diseases remain unsolved. An information webinar for potential applicants will take place on 16 December 2025, 15:00–17:00 CET.
The call will welcome proposals under the theme:
Resolving unsolved cases in rare genetic and non-genetic diseases through variant validation and new technological approaches
Access the pre‑announcement
An informational [...]
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Register now for the European Society of Endocrinology (ESE) Hypoparathyroidism Patient Forum 2025 taking place on Saturday, 15 November from 10:00-13:00 CET.
Programme highlights:
🔹 Social Impact of Hypoparathyroidism – chaired by Prof. Andrea Giustina & Prof. Alberto Pereira
• François Houÿez, EURORDIS – amplifying the rare disease patient voice in Health Technology Assessment
• Prof. Heide Siggelkow – new insights on quality of life and social impact
• Natalie Grosset – the patient journey
🔹 Revised ESE Guidelines [...]
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